For the Love of Gracie

Gracie Ann, not quite two years old, was not well.

Seizures had become more frequent for little Gracie, but she had suffered particularly severe seizures on two consecutive nights and was spiking another fever. She had been home just four days after another hospital stay as she recovered from a stubborn respiratory infection. Her mother, Kerry, administered her emergency medications and gave her a cooling bath.

By morning, the fever had returned, and Gracie was lethargic and acting strangely. Alarmed, Kerry phoned her husband, Jeremy, to come home from work. When he saw Gracie’s labored breathing, they called 911.

“I sat in the ambulance with her as the medics tried to get a line in her,” Kerry recalled. “They had to leave fast, so I gave her the last kiss I would ever give her. That was the last time I saw my sweet angel alive.” Kerry, immune-compromised since her double-lung transplant, could not accompany her daughter to the hospital.

Jeremy rode the ambulance as the EMTs stopped by a fire station and then an emergency room seeking help in getting Gracie’s IV started. Then there was a long, stressful transfer via ambulance to a children’s hospital. Jeremy kept Kerry updated by phone and text message as both prayed fervently.

En route, the situation turned grave, and CPR was initiated. After 24 minutes of chest compressions in the hospital, Gracie Ann was declared dead.

Unable to phone Kerry, Jeremy sent a brief text: “Heaven just acquired an angel.”

Gracie Ann’s death on February 9 of this year was part of a long journey of faith and perseverance for Jeremy and Kerry Lustig of Keller, Texas, Legates of the Fort Worth Chapter. Their story dates to Kerry’s childhood.

Kerry was born with cystic fibrosis, a terminal lung disease, and was not expected to live long. “My parents were told to simply take me home and love me,” she recalled. But her devoutly Catholic mother and father were determined she would survive.

“My parents knew I was fragile, so they prayed a lot and raised me like any other child, staying on top of my appointments, daily meds, and daily therapies,” Kerry explained.

After Kerry and Jeremy fell in love during college and began talking about marriage, Kerry told him about her condition. “I knew that my CF would be a cross that both he and I would have to bear,” she said. It was no obstacle for Jeremy; he soon proposed marriage, and they were wed after graduation in 1997.

Since CF affects fertility, the Lustigs started having children while Jeremy was in dental school. Madison, Savannah and Nicholas were born uneventfully in two-year intervals, but nine years passed before Isaac came along in early 2014.

Because CF is a progressive disease, Kerry had grown sicker over the years. A month after Isaac’s birth, her health took a turn for the worse. She suffered respiratory arrest, was hospitalized, and was placed on a ventilator. Returning home, she struggled to stay well.

In February 2016, in her 30th week of a very difficult pregnancy, Kerry was in the hospital for outpatient lung treatments when she coughed and broke a major vessel in her lung — a life-threatening condition — and was admitted. The next morning, Gracie Ann was delivered via emergency C-section. But Gracie had been deprived of oxygen for several minutes and sustained brain damage, triggering the seizures that would later plague her. Given the situation, Jeremy baptized Gracie in the NICU.

Neither Kerry nor Gracie was expected to survive.

The Lustig family was in full crisis mode. Jeremy’s orthodontics partner managed the practice so he could devote full attention to his wife and infant daughter, dividing his time between the ICU and NICU. Jeremy’s mother moved from Utah to Texas to care for the other four children.

“My father came and went while having to work, but my mom was here indefinitely or until we were self-sufficient,” Jeremy said. During those first three months, Jeremy never left the hospital. “The kids came to the hospital a couple times a week so we could see them,” he said. “They would bring me clean clothes and take dirty ones home. It was very hard on them.”

Many supported the family in faith. “We had so many prayer warriors storming heaven for both Gracie Ann and me,” Kerry said. A prayer network developed out of text messages Jeremy began sending to family and close friends. “As word got out, there was a large influx of people texting me — asking for updates, expressing concern, and offering prayer for Kerry, Gracie, and our family,” Jeremy said. “The list of people in this text thread grew to a few hundred in almost no time.”

Gracie Ann, just 3-1/2 pounds at birth, was touch-and-go at first but “surpassed all reasonable expectations,” Jeremy said. Her survival turned into a roller coaster ride as she suffered bleeding on the brain and fought repeated infections. Kerry also had a rough time: under heavy sedation, she required breathing support for her damaged lungs, had internal bleeding, and required multiple surgeries. Thrice she had to be resuscitated.

Three months later, mother and child were released to go home. Kerry’s lungs were in such bad shape that she was placed on a waiting list for a transplant. “I was really physically struggling,” Kerry remembered. “Before the lung call, I was unable to walk and was on oxygen 24/7. I couldn’t be a mom physically and couldn’t do anything for myself.”

In October 2016, a donor was found and Kerry underwent a double-lung transplant. She faced a long recovery and a lifelong regimen of anti-rejection drugs. By that time, however, Gracie was having seizures. Around her first birthday, she required a feeding tube. During one ER visit, Gracie went into cardiac arrest and was revived. Her seizures became more frequent and severe.

Throughout all these challenges, the Lustigs’ Catholic faith remained strong.

“Jeremy and I have always known and still continue to believe that all our crosses are intended to glorify God, and they have,” Kerry said. “I never lost my faith but held onto it as tightly as I could, for God revealed to me that he alone was the reason I was alive.”

Gracie’s health declined with time. “As the seizures took a toll on her little brain, she began to lose functionality that she had gained against all odds,” Jeremy said. A respiratory infection stretching into early 2018 landed her in the hospital again. Four days after her discharge, Gracie was gone.

“When Gracie Ann passed away, a part of me died. I will always feel an emptiness,” said Kerry. “But Jesus is a gentle Father, and He carries me through my sorrows each day…. We praised Him in the most painful hour when she died, and we continue to praise Him as we must live our lives without her.”

Difficult and painful as Gracie’s death was, the Lustigs believe it drew their family closer together.

“We are stronger in faith today and more in love than ever,” Kerry affirmed. “Our family has benefitted so greatly from this cross.”